Another Piece of the Puzzle - Biopsy Results In

Dr. Montes called today with the biopsy results.  It appears that there is inflammation in the cells taken from the colon.  The inflammation seen is common with types of food allergies.  The two biggest problems are dairy and egg.  So, as of today, no dairy or egg for both Mom and Logan.  This helps explain some of the food aversion he has.  Why eat if it makes you feel horrible?
Dr. Montes is recommending we have a pediatric allergist conduct a skin prick test to help isolate his biggest allergens.  We will need to go through his pediatrician, Dr. Matsumoto, for this.   Additionally, he recommends that we move him over to a perscription hypoallergenic formula.  I'll be picking up some samples from his office today to see which one Logan will tolerate.  He gave us a link (www.foodallergy.com) for a complete list of foods we need to avoid until he has further testing.  Fun!!  : )  We'll have a follow-up with Dr. Montes in 2 months to evaluate how he is doing.

Bottoms Up!!

At 9:00 am today, Logan had his upper endoscopy and sigmoidoscopy.  The procedure itself went very smoothly.  We love Dr. Montes and once again, the staff at Banner Desert were great to work with!  The most difficult part of today was watching Mom holding Logan still as the nurses administered his anesthesia.  The 20 minute procedure revealed that Logan has some acid reflux , something we were almost sure he had since birth.

While scoping our son's GI track, Dr. Montes took several biopsies.  The biopsies will help determine if there are any abnormalities on the cellular level.  He will also be looking for any food allergies that might be agrevating the tissues.   We should hear the results from Dr. Montes later next week.

Logan received a small dose of Demerol to help smooth out his recovery this morning.  You thought messing with drunk people was fun!  Try playing with a slightly impaired toddler!  : )  After Logan was discharged, Mom and Dad grabbed a quick bite to eat at Mangoes (on Main Street in Mesa, one of our favorite Mexican restaurants).  Logan was simply fascinated with the ceiling fans.  Hhmmm, I wonder what ceiling fans look like when you're on Demerol? Other than being a little tired and grumpy, Logan has done very well and we're all looking forward to restful night.

Tender Mercies

From before we were even pregnant, I began to notice the tender mercies of the Lord with this choice spirit. I began to have dreams that when I was asked how many children I had, I would always say I was the "mother of 5". For several days, I dreamt similar things over and over. I even felt that "cradling" of the bed on my abdomen that you normally feel as the baby gets bigger, even before I knew I was pregnant.
Then, finding out Logan was breech, and having an external version performed to turn him, we were again blessed with the ease of the procedure and Logan's adaptation to his new position. Being a slightly risky procedure, we counseled with the Lord about it. We were filled with peace.
As we have struggled with the issues Logan has had, essentially from birth, I have felt over and over the Lord's comforting hand. Both in and out of the temple, I have had the whisperings of the Spirit testify to me that Logan is as the Lord would have him be, everything would be fine with him, and the blessings of the temple do extend to our families.
As we prepared for Logan's MRI, and again, he could only have clear fluids after midnight, and nothing after 4:30 am, Logan refused to drink anything for 14 hours. Yet, his happy nature never waivered. He was smiling and content and happy. What a blessing this sweet boy is to us.
Last Friday, we met with Az Early Intervention. Again, the frustrations we felt with originally being denied speech and feeding services were turned into a blessing. Because we had already seen and been evaluated by a speech therapist, yet had the insurance deny it, we automatically qualified for services. We also qualify for services through DDD, which allow us to have therapy past the age of 3. It also allows us to have music therapy (Logan is a huge fan of Jazz). Mom is thrilled!
And then, yesterday, at approximately 4:30 pm, we were blessed with yet one more tender mercy from the Lord. We have been so concerned about Logan drinking clear fluids so he can take the Miralax and have the test done without being admitted to the hospital. Well, yesterday, I had to call the Dr. and inform him that clear fluids were still a no-go with Logan. I spoke to Dr. Montes's nurse. After speaking with Dr. Montes, she called back and informed me that they would NOT have to admit him, nor do the naso-gastric tube, nor IV,etc... We have been permitted to keep him on breast milk and as much clear liquid as he will tolerate and use suppositories instead of the Miralax. I began to cry, and then remembering I had just put make up on to go to pack night, sucked it up. :-) What a blessing! We have felt such a load lift and such a peace come over us. I know that the Lord has seen fit to bless us yet one more time in this endeavor. How we ever became worthy of such love and acknowledgement, I will not know. I do know that the scriptures say that "God loves those who love Him." And we love Him. If this has left us worthy of his mercy, than I consider myself extremely blessed to be in His hands.

Blood Work Results

Also on 10 September 2009, we received the final results from Logan's metabolic screens.  There are some abnormalities present but not enough information to lead Dr. Sweetman to any specific disorders.  I will post the results here but I can't tell you what it all means yet.  We're still piecing this one together.
The results that came back abmormal are:
Test                                                 Value (Ref Range)
Adipoylcarmitine, C6DC                       0.02   (< 0.02)
OH-Dodecanoylcarnitine, C12OH          0.02   (< 0.02)
OH-Tetradecenoylcarnitine, C14:1-OH  0.02   (< 0.02)
OH-Hexadecenoylcarnitine, C16:1-OH  0.02   (< 0.02)
Methylmalonylcarnitine, C4DC             0.04   (< 0.02)
OH-Butyrylcarnitine, C4OH                 0.11   (< 0.05)

Elevated 3-Hydroxybutyrylcarnitine (C4-OH) can be seen in short-chain 3-hydroxyaicyl-CoA dehydrogenase (SCHAD) deficiency and in ketosis.
Elevated C4DC may be found in vitamin B12 deficiency, cobalamin defects, and methylmalonic acidemias.  However, the level of C3 is with in the normal range.

Our next step is to have an upper GI with biopsies performed on his esophagus, stomach and duodenum.  We will be looking for any abnormities in these organs that might be contributing to his syndrome.  To perform this test, Logan has to have nothing but clear liquids for a full 24 hours prior to the test.  This is a huge challenge because he does not eat or drink most foods.  He likes butter (see picture to the right) but that's not a clear liquid.  He won't tolerate water or juices.  He must drink a certain amount and take down a drug that will prepare and clean his GI track.  If he does not cooperate, we will need to hospitalize him the day before, set IV's and perform a gastric lavage.  The upper GI is scheduled for 25 September 2009.

In October, we will have a neuro-genetisist consult.  They will evaluate where he is, order another round of very expensive and specific tests and write up a program we can begin to follow to assist his brain development.  We are hoping we can get in with this group in October as they only take on new cases once a month.

More Information - Grave Concerns

On 10 September 2009, we had our follow-up visit with Dr. Sweetman. We quickly learned that things are not as good as we had hoped. After consulting with another specialist, Dr. Sweetman believes that while Logan's brain is normal, in that anatomically everything is in place, it is the brain of a 6-9 month old, not a 14 month old. Logan's brain is not developing as it should.

Worse case scenario: As Logan continues to grow, his brain will lag further and further behind and he will be severely developmentally delayed. Best case scenario: We can figure out why his brain is doing what it is doing, reverse or modify the course it is on and he might get away with a few learning disabilities. Dr. Sweetman is optimistic that he will do well. He is very social and is reaching developmental mile stones, just later than we would like.

Faith, Fasting and Priesthood - A Special Blessing to Our Family

On 30 August 2009 we invited family and a few friends to join with us in fasting for our Logan.  Following the fast, we wanted to seek a Priesthood blessing.  As Carrie and I talked about this, we knew we wanted to petition the Lord to heal our son.  We had the faith that He could.  We've witnessed miracles before in our own lives and in the scriptures.  We knew that the Lord who created his little body, could heal whatever was wrong.  We had to ask.

Following our day of fasting, we asked Malin Lewis, our Stake President to assist us with the blessing.  President Lewis anointed and I sealed and blessed.  As hard as I tried, I was not allowed to pronounce a healing blessing.  A restraining hand simply said, "No."  Immediately following the "no", an overwhelming feeling of peace settled over me and I knew that this was the way he was supposed to be.  Logan would have challenges but he would be alright.  He is to be a special blessing to our family.

Magnetic Resonance Imaging - Good News!

Since closed sutures are not the cause of Logan's slowing head growth, our next step was to look at his brain to ensure that everything is developing as it should.  So, on 20 August 2009, we headed back to Banner Desert for an MRI.  This test is a little more involved than taking a few skull x-rays and our 14 month old would have to remain perfectly still for over 40 minutes.  To do this, he would need to go under anesthesia. While under anesthesia, the nurses took several blood samples to begin much of the metabolic testing to rule out any underlying disorders.
The MRI techs at Banner Desert were wonderful.  Logan did great with his anesthesia and a worried Mom and Dad had their little boy back within an hour. 

A couple of days later, Dr. Sweetman called.  The preliminary report from the hospital was that everything looks normal.  However, she felt that there were some areas that appeared somewhat underdeveloped and she wanted to consult with a pediatric radiologist before she made her final report.  Additionally, some of the preliminary blood tests are coming back normal.  Great!  This is good news!  Structurally, the brain is doing what it is supposed to do and things are looking well metabolically.  Perhaps this is just a GI issue?

A New Pediatrician - Concerns Finally Addressed

    Meeting Dr. Matsumoto was a welcomed breath of fresh air. She too was very concerned about Logan's failure to thrive. We no longer needed to try to "convince" the doctor that something was not right. She felt we needed to address of our concerns aggressively and diagnosed Logan with "microcephaly". Mom and Dad knew something was not right but we had no idea it was potentially this serious.

    In essence, microcephaly describes the syndrome that has many possible causes. His head may not be growing because 1 – his cranial sutures have fused, not allowing the brain to expand and develop as needed, or 2 – his brain is not developing and growing as it should therefore not expanding at a normal rate, or 3 – there are metabolic and/or gastric disorders that are delaying his growth or 4 – there are genetic disorders causing the problem.
   

    Our first step was to have skull x-rays taken to ensure Logan's cranial sutures were open and had not fused yet. I'm unsure if any of you have had the pleasure of trying to hold still a wiggly 13 month old so a rather slow x-ray tech can snap about 8 films of your baby's melon. Oh, keep in mind that the head must remain perfectly still and at just the right angle... After about 30 minutes and a clingy baby deathly afraid of an x-ray table, we got the shots we needed and everything looked good and open, ruling out cause #1 above.

Concerns Noted

    From very early on, Mom and Dad felt that something was not the way it should be. We began to notice small things that weren't exactly right. Having four older siblings has taught Mom and Dad a little about what to expect with this little ones.

    Logan had some difficulty figuring out the whole nursing thing. He never had a strong suckle and would never take a "binky". After feedings, he would frequently vomit. Mom did what she could to modify her diet to ease the upset to his little tummy.
   

    Then, in early 2009, Logan's growth rate began to fall below his growth curve. Most concerning was that his head circumference was not even keeping pace with his falling weight curve.
    After being ignored about our increasing concern for our son, we decided to change pediatricians and attempt to find more answers about what was going on.

Logan's Birth

Mother's Day 11 May 2008

   At 11:45p our little miracle took his first breath.  Weighing in at a whopping 10 pounds 8 ounces Logan Enoch made his screaming entry into our family and hearts. 

   With fat rolls everywhere, his older sister Jessalyn declared he looked like a Shar Pei puppy!  His face was so chubby that when he would cry, his eyes would totally disappear and a little "fat knob" would appear right between his eyes above his nose.

   After an uneventful night's stay at the hospital, we took our little ball of chub home.